AB1253 DISEASE PERCEPTION ASSESSMENT IN JUVENILE IDIOPATHIC ARTHRITIS PATIENTS AND THEIR PARENTS.
Authors: A. Fazaa, S. Nouicer, S. Miladi, H. Boussaa, K. Ouenniche, L. Souabni, S. Kassab, S. Chekili, K. Ben Abdelghani, A. Laater
Journal: Annals of the Rheumatic Diseases (2022)

Background Juvenile Idiopathic Arthritis (JIA) has an impact on the quality of life of the patient and his family. Parent/patient reported outcomes have shown an increasing interest in the management of JIA because it reflects the perception of the disease course and the effectiveness of the therapeutic interventions. Objectives To determine the level of agreement between patients with JIA and their parents for the five quantitative items in Juvenile Arthritis Multidimensional Assessment Report (JAMAR) questionnaire. Methods We included children aged between 7 and 18 years old with AJI (ILAR criteria) and their parents. Demographic data and disease related parameters were collected. We asked both parent and child to complete the five quantitative items of JAMAR questionnaire. Were measured on a 21-numbered circle visual analogue scale (VAS) for pain (0 =no pain; 10 =very severe pain), disease activity (DA): (0 =no activity; 10 =maximum activity) and well-being (WB): (0 =very well; 10 =very poorly). Physical function was assessed by Juvenile Arthritis Functional Score (JAFS) [0-45] and health-related quality of life (HRQoL) [0-30] through the Physical Health (PhH) and Psychosocial Health (PsH) subscales. We calculated children and parents median scores for the five items. Intra class correlation coefficient ICC was used for analysis (ICC below 0.50: poor; between 0.50 and 0.75: moderate; between 0.75 and 0.90: good; above 0.90: excellent). Results A total of 21 patients/parent (12 girls and 9 boys) were included in the study. Forty percent belong to rural enviroment. Majority of patients were in secondary school (77%), 23% were in primary school. Seven patients had oligoarticular JIA, 13 had polyarticular JIA and one had systemic JIA. Median age at diagnosis was 11.4 ± 1.2 years [6-13]. Median age at disease onset was 9.5 ± 1.9 years [2-13]. Median disease duration was 4.3 years [0-7]. Median JADAS was 10 [8-18]. Uveitis was noted in 30% of cases. Comparison of parent proxy-reported and child self-reported data revealed a striking similarity for all items (p&lt;0.001). The results of the five quantitative items of JAMAR questionnaire are represented in Table1. Good correlation was noted in JAFS, DA VAS, well-being VAS and HRQoL. Excellent correlation was noted in VAS pain. Table 1. Assessement of quantitative items of Juvenile Arthritis Multidimensional Assessment Report by patients and parents. Items Patients Parents ICC Mean pain VAS (0-10 ) 4.2 [4-6] 4.3[4-6] 0.97 Mean disease activity VAS (0-10 ) 4.1 [4-5] 4.2 [4-5] 0.81 Mean well-being VAS (0-10 ) 4.4 [4-6] 4.3 [4-5] 0.9 Mean Juvenile Arthritis Functional Score (JAFS ) 10.0 [1-20] 10.2 [2-21] 0.81 Mean HRQoL score 14.1 [7-17] 14.8 [6-14] 0.88 ICC: Intraclass Correlation Coefficient; HRQoL: Health-Related Quality of Life; VAS: Visual Analogue Scale. Conclusion Our study showed high level of agreement between patients and parents. The JAMAR provides a promising approach to quantitative measurement in standard pediatric rheumatology care. Availability of this new instrument may enhance regular use of parent/patient questionnaires in routine practice and improve disease management. Disclosure of Interests None declared